While sitting with the ladies in my ex-husband's family in Saudi a couple of weeks ago, my ex-sister-in-law (sorry for all the ex's, what do you say...)who is a highly aclaimed internist there, called my oldest son, who's just chosen orthopedic surgery as his speciality, to confer with her. The topic was my youngest son who is 14. She examined him, in one of the bedrooms, and suggested that he has Marfan Syndrome. I just thought he was tall and lanky. Thank God she noticed. I guess it slipped past all the docs in the US here, or just came out recently, during his growth spurt. He will have three exams, eye, heart and bone. It was a very rough time for me, learning that this is probably true. There are some great sites and sources for information. The hardest thing is that my baby just lives for soccer and wanted to "go out" for high school basketball this coming season.(The competitive sports and hard training will be out of the question.) I hope he doesn't have the disorder. He doesn't know anything yet, until he sees the doctors there in Riyadh, to make sure. I didn't stay there long, just a week, cause it's his time with his dad during the summer, plus the atmosphere about US citizens is currently scary. Anyway when he comes back, I'll be taking him also to one of the diagnostic and treatment centers over in St. Louis. From what I've read on the main site, he does appear to have the disorder.
But it is encouraging to read the positive stories. Sometimes it is caused by a mutation in a specific gene. He has always been able to bend some of his fingers way back, and I have always sensed a fragility about him, but nothing specific. I'm sure this wasn't apparent until just recently, the past few weeks. praying he doesn't need heart surgery. I've also read that sometimes they are prescribed beta blockers. This is a blow, but it looks like it is something that can be lived with. I'm so glad I found this thread when I just did a search.